Imagine my excitement this morning when I got an email from Jennifer in the USA. Jennifer had a Lymph node Transplant two years ago in New York, her surgeons were Dr Corrine Becker, Dr J. Levine and Dr Julie Vasile. The first part of her story is posted in “Two years after Lymph Node Transfer In New York“. She had some fantastic news which I will post in her own words.
“Follow up visit – 2 years post surgery:
Last year, in April, 1 year after my actual lymph node surgery, I had an MRI that showed the 3 nodes implanted and the very beginning of the lymph vessel growing. They referred to the nodes as small. But my surgeon explained that all nodes are small…
I had a 2nd MRI in March of this year and received results in May at my follow-up appointment. The news was very good! The nodes are visualized, there are actually 5 on the right side (including the 3 newly transplanted ones) and 2 lymphatic vessels connected and growing. From what I understand, a lymph vessel has reached half way down to my knee, and it is 1 millimeter in diameter. When I asked if that was a good sized diameter the Dr. responded, “That’s like a Highway!”
So, I left the appointment with a lot of hope. I was told that my leg was continuing to do well, the tissue feels very soft and moveable.
The reality though is I still wear a compression stocking during the day and a tribute sleeve at night. It was suggested that I try going without the stocking during the day at times when I am active, as in walking around, moving about, no long time standing/sitting in other words. Hard to do!! I am complying by not putting the stocking on first thing when I get up. I do morning routine stuff for about 1 hour. I am leery of this because I am so conditioned not to let any additional swelling take hold. I might take a bike ride without a stocking, and see what happens. Oh the freedom of not being encased!
In comparison between 2 years ago, pre-surgery and today: I can do so much more physical activity without ‘feeling’ the fatigue, achiness, swelling, etc. I forget what it was like. I just realized this last night, as it had been beastly hot here, and I am doing really well! Don’t get me wrong, it’s still there, the swelling, but it is definitely getting better. My shoes fit better, my toes aren’t sausages, the top of my foot has lost the camel hump (though edema is still trapped there) I see more definition to my knee, I see some muscle definition when I flex my leg (I have to flex pretty hard, but nonetheless!).
We are talking about a second lymph node transfer to the ankle region as well as some “mini lipo” to the outside of the leg where fat has deposited that doesn’t’ belong. This scares me, but I had a consensus of three wonderful doctors who agreed with it. No need to wear permanent stockings afterward, because this is not the ‘debulking’ method, but judiciously removing a little fat from the problem areas. I have an ugly lump where my thigh high stocking ends. It looks like a have a bagel around my leg….Ughh…
The MRI is a super valuable exam as it shows where the fluid is trapped and how much, as well as visualizing the lymph nodes and vessels. Also, it’s valuable for the lymphedema therapist to know this information as well, as they then know exactly where to send fluid for better results.
This is a specialized Lymph MRI I had done at Weill-Cornell in NYC.
So, all in all, I feel encouraged and I hope that you will feel encouraged and hopeful as well. We may never have what we had prior to Lymphedema but at least the worst of the nightmare is hopefully coming to an end”…. Jennifer
So it is true they really do grow!!! All of us who are waiting for things to happen Jennifer says, “If you can, to have as much lymphatic massage as possible. In the first few months of the transplant it’s very important. Even if you can self massage as best you can. You want to ‘wake up’ those newly transplanted nodes and get them working full time.”
Thank you so much Jennifer for sharing, it is so helpful to hear other’s progress. Anyone else who would like to share their experience please email me at firstname.lastname@example.org I will change your name if you wish to retain your privacy.